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ST PAUL’S EYE APPEAL FOCUS Spring 2014 We want to hear from you. Please send us your feedback on this newsletter. Whether good or bad we want to hear it so that we can tailor future newsletters to what you would like to read. Our contact details are at the back. St Paul’s Eye Appeal FOCUS SPRING ISSUE IN THIS ISSUE It is estimated that two million people in the UK are living with sight loss and, on Merseyside, over 8,500 are registered blind or partially sighted. Age related macular degeneration is the leading cause of blindness in adults. Other significant causes of sight loss are glaucoma, cataracts and diabetic retinopathy. An ageing population and an increase in underlying causes such as diabetes and obesity mean that a dramatic increase in national and global incidences of sight loss is predicted over the next 25 years. Ground-breaking work at Liverpool's St Paul's Eye Unit, however, is transforming the outcomes for thousands of patients suffering from eye disease. Its status as one of the world's leading clinical research institutions means that it can provide rapid access to the very latest approved treatments as well as early stage drugs three or four years ahead of them being licensed. A string of recent developments has reinforced St Paul's reputation as a global centre of clinical research excellence. Recently, NICE (National Institute for Health and Care Excellence) announced its recommendation for the drug Ranibizumab as a treatment for sight problems caused by diabetic macular oedema, a condition which affects a person's ability to see detail and colour. St Paul's Eye Unit has recently led a 15 centre UK study of the use of Ranibizumab in 109 patients with sight-threatening diabetic macular oedema which demonstrated its benefit. These positive clinical findings have been presented at international scientific meetings. Another drug, Aflibercept has also been approved for use in the treatment of age related macular degeneration after collaborative studies with healthcare giants Bayer. The Importance of Eye Donation St Paul's Eye Unit is campaigning to raise awareness of the importance of eye donation and encouraging people to consider giving others the gift of sight. Page 3 Always attend your appointment St Paul’s is urging people with diabetes to attend their annual eye screening appointment and explains why it is crucial. Page 5 St Paul’s is Leading the Way in Global Research Cont Page 2
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Page 1: St Paul’s Eye Appeal FOCUS · visit St Paul’s Eye Unit each year, accounting for around 1 in 4 patients visiting the Royal Liverpool University Hospital. St Paul's Oculomotor

ST PAUL’S EYE APPEAL FOCUS Spring 2014

We want to hear from you.

Please send us your feedback on this newsletter. Whether good or bad we want to hear it so that we can tailor future newsletters to what you would like to read. Our contact details are at the back.

St Paul’s Eye Appeal

FOCUS

SPRING ISSUE IN THIS ISSUE

It is estimated that two million people in the UK are living with sight loss and, on Merseyside, over 8,500 are registered blind or partially sighted.

Age related macular degeneration is the leading cause of blindness in adults. Other significant causes of sight loss are glaucoma, cataracts and diabetic retinopathy. An ageing population and an increase in underlying causes such as diabetes and obesity mean that a dramatic increase in national and global incidences of sight loss is predicted over the next 25 years.

Ground-breaking work at Liverpool's St Paul's Eye Unit, however, is transforming the outcomes for thousands of patients suffering from eye disease. Its status as one of the world's leading clinical research institutions means that it can provide rapid access to the very latest approved treatments as well as early stage drugs three or four years ahead of them being licensed.

A string of recent developments has reinforced St Paul's reputation as a global centre of clinical research excellence.

Recently, NICE (National Institute for Health and Care Excellence) announced its recommendation for the drug Ranibizumab as a treatment for sight problems caused by diabetic macular oedema, a condition which affects a person's ability to see detail and colour. St Paul's Eye Unit has recently led a 15 centre UK study of the use of Ranibizumab in 109 patients with sight-threatening diabetic macular oedema which demonstrated its benefit. These positive clinical findings have been presented at international scientific meetings. Another drug, Aflibercept has also been approved for use in the treatment of age related macular degeneration after collaborative studies with healthcare giants Bayer.

The Importance of Eye Donation St Paul's Eye Unit is campaigning to raise awareness of the importance of eye donation and encouraging people to consider giving others the gift of sight. Page 3

Always attend your appointment

St Paul’s is urging people with diabetes to attend their annual eye screening appointment and explains why it is crucial. Page 5

St Paul’s is Leading the Way in Global Research

Cont Page 2

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ST PAUL’S EYE APPEAL FOCUS 2

Continued from page 1

Ian Pearce is a Consultant Ophthalmologist at St Paul's and the clinical expert for NICE appointed by the Royal National Institute for the Blind (RNIB). He said: “These are major steps forward in the treatment of macular degeneration giving patients more choice and drastically reducing the frequency of treatment visits and the likelihood of re-treatment. This is fantastic news for patients and is just part of our commitment to an on-going programme of research and development. Although St Paul's has a history dating back over 100 years, we are at the

forefront of global developments in eye health.”

“In 95% of cases we can prevent total sight loss but this is dependent on early diagnosis. We are committed to promoting the importance of eye health and encouraging people to ensure they attend eye screenings so

they can be treated early if necessary.” St Paul's Eye Unit is situated within the Royal Liverpool University Hospital and treats over 80,000 patients from across Liverpool, the UK and abroad.

St Paul’s Eye Hospital was established in 1871 to provide the very best treatment, care and support for those affected by sight loss. Its humble beginnings started when two front rooms were hired at 6 Old Hall Street, Liverpool, on a Wednesday and Saturday. It had grown from seeing 549 patients in 1871-71 to 1,569 in 1873-74. From 1882 to 1886 the total attendances of patients had risen from 4,751 to 19,696 and expenditure from £244 to £1,043 per year.

Over 80,000 people visit St Paul’s outpatient clinics each year and considerably more are cared for by our doctors and other health

specialist teams in the community. From our humble beginning St Paul’s is now regarded as a “centre of excellence” renowned throughout the world for its pioneering treatment and research.

The new build of the Royal Liverpool University Hospital, the redevelopment in the University of Liverpool’s Department of Eye & Vision Sciences and the creation of the Liverpool Bio Campus will ensure a bright future for eye treatment.

The full history can be found at www.eyecharity.com

“In 95% of cases we can prevent total sight loss” by Name Style

History of St Paul’s Eye Hospital

Above - Number 6, St Paul’s Square Below- St Paul’s waiting room, 1922

Consultant Ophthalmologist, Mr Ian Pearce

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ST PAUL’S EYE APPEAL FOCUS 3

St Paul's Eye Unit is campaigning to raise awareness of the importance of eye donation. Every year in the UK, cornea transplantation helps restore the site of over 2,500 blind and partially sighted people. The cornea is the clear outer layer at the front of the eyeball. It acts as a window to the eye. If the cornea is damaged through injury or disease, it can become less transparent or its shape can change. This can prevent light from reaching the retina and causes the picture transmitted to the brain to be distorted or unclear resulting in severe sight loss or blindness. Young and elderly people can benefit from a corneal graft. The youngest person ever to receive a corneal transplant was just a few days old and the oldest was 104.The most common reason for corneal transplantation in younger people is a condition called keratoconus where the cornea becomes misshapen and cone-shaped. In older people, age-related or inherited conditions may lead to cloudiness of the cornea. More than 52,000 corneal transplants have been recorded on the UK Transplant Registry since 1983. According to

NHS figures, the number of people willing to become eye donors has increased. Last year over 3,000 cornea donations were made but there is still a major shortage of corneas in the UK. Many more people would benefit from a sight-saving transplant if more eyes were donated. Dr Liezl Gaum is an internationally renowned expert in ocular tissue donation and is based at St Paul's where hundreds of corneal transplants take place every year. She says: “Corneal transplants are successful sight-saving operations, with 93% of transplants functioning after one year. By five years, 74% of transplants are still functioning and many will continue to for many more years after that. One donor can actually restore or dramatically improve the sight of two people transforming their quality of life. People who are willing to donate their eyes can also make an important contribution to research as well.” “Despite the increase in numbers of eye donors there are still a number of misconceptions around the concept of eye donation which sadly prevent people from donating. Some people are willing to consider donating other organs but simply don't like the concept

of donating an eye. Sometimes it is families that are reluctant. It's very important for anyone who has signed the donor register to discuss their decision with their immediate family at the time. Transplants are one of the most miraculous developments in modern medicine and they depend entirely on the generosity of donors and their families who are willing to make this life-saving or life-enhancing gift to others. We want to promote individual choice as well as reassure people that the process of donating is one which is treated with the utmost respect and dignity.”

Leaders of all faiths support the principal of organ donation. Anyone can become an eye donor by signing the Organ Register www.organdonation.nhs.uk/Register.

Organ Donation UK will also answer any questions potential donors may have and can be contacted on 0300 123 23 23

St Paul's Urges People Not to Lose Sight of the Importance of Eye Donation

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ST PAUL’S EYE APPEAL FOCUS 4

Possible breakthrough into brain

function

There are also tax implications to Legacy Giving, as the Government has made legacy giving exempt from inheritance tax.

St Paul’s

Awarded Freedom of City

Dr Paul Knox watches an eye tracker in use

St Paul’s Eye Unit has been awarded the City of Liverpool’s highest honour and will now be admitted to the Freedom Roll of Association and Institutions.

The accolade is recognised as the ‘the highest nomination that can be bestowed to an organisation that

has rendered significant and valuable service to the City and its citizens’.

At an Extraordinary Council meeting held at the Town Hall, Liverpool’s first Mayor, Joe Anderson, expressed his agreement that St Paul’s should receive the award in recognition of its many years of outstanding work treating the people of Liverpool and beyond. A unanimous “yes" vote was secured. This means that representatives of St. Paul’s will be invited to a formal ceremony at the Town Hall later this year where they will be presented with their official scroll.

During the Council meeting, Mayor Joe Anderson revealed that he used to volunteer at St Paul’s Eye Hospital on Old Hall Street through St Peter’s Roman Catholic Church where he was a parishioner.

St Paul’s provides a world renowned ophthalmic service regarded globally as a centre of excellence for care, research and education. Over 80,000 patients visit St Paul’s Eye Unit each year, accounting for around 1 in 4 patients visiting the Royal Liverpool University Hospital.

St Paul's Oculomotor Group is leading a ground breaking study involving collaboration with the West China Hospital in Chengdu (Sichuan, China) which could lead to important new discoveries around brain function.

Dr Paul Knox, based in the Eye and Vision Science Department at the University of Liverpool, working closely with the team at St Paul's Eye Unit, is leading the CoSAC project (Comparison of Saccades across Cultures). A saccade is the rapid eye movement that takes place quickly when an object comes into view.

Using an eye tracker, Dr Knox and his team measures the time taken (latency) to respond to a flash with an eye movement. Around 5% of UK participants make lots of saccades with low latencies of around 100 milliseconds. But in China this type of response occurred in between 20% and 30% of healthy adults. Dr. Knox said: “In the CoSAC project we’ve shown that British-born Chinese participants, who are culturally similar to a Caucasian control group, are identical to Chinese–born participants in oculomotor terms. Culture can’t

explain the difference we’ve found.” Results will be presented at the annual meeting of the Society for Neuroscience, in San Diego, California this November. The CoSAC project is funded by a grant from the Leverhulme Trust. The St Paul's Oculomotor Group is based in Dr Knox's oculomotor labs in the University of Liverpool's Department of Eye and Vision Science. A significant number of other research projects are taking place.

Above –Liverpool Town Hall Courtesy of John Foley ©

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ST PAUL’S EYE APPEAL FOCUS 5

Diabetic retinopathy is a serious complication and the leading cause of vision loss in people of working age in the western world. Around 4% of people in Liverpool have diabetes and this is set to increase to 6.19% by 2025 representing a predicted rise in the number of people with diabetes to nearly 26,000 over the next twenty years. Liverpool's St Paul's Eye Unit has been at the forefront of pioneering developments into both causes and treatments for diabetic retinopathy and established one of the first Diabetic Eye Screening Programmes in the UK, which has provided the basis for the National Screening Programme in England and has been replicated all over the world. Dr Deborah Broadbent is the Director of Eye Screening at St Paul's. She is keen to raise awareness of how important it is for people with diabetes to attend their screening appointments. “The good news is that, if diagnosed early enough, the majority of cases of diabetic retinopathy can be treated successfully. The problem is that, during the initial stages there may not be any noticeable symptoms and if patients wait until their vision starts to deteriorate we may only be able to preserve what sight is then remaining. Regular, annual screening for retinopathy is absolutely vital for anyone with diabetes in order to avoid this preventable condition. Sadly we are continuing to see patients who have left it too late.” The globally acclaimed St Paul's Diabetic Eye Screening Programme considerably over the last twenty

Eye Screening Unit has evolved years. Originally, charitable donations funded the first mobile units to deliver the screening in the community. St Paul's subsequently undertook research into the value of photographic screening and gradually the size of the fleet and team increased providing state of the art digital imaging technology on six sites across Merseyside. The team continue to undertake extensive research projects with the support of the Liverpool based Foundation for the Prevention of Blindness. Back in 1991 700 screening invitations were distributed. Last year the figure was 23,000.

“We simply can’t stress enough the importance of making eye screening a priority”

Dr Broadbent says that whilst this is a major increase in screening activity she still has concerns about the number of patients failing to attend appointments who do not seem to realise the consequences of not undergoing screening every year. “We want people with diabetes to ensure that they prioritise their eye screening appointments and, if they can't attend for any reason, to re-book through our call centre. We simply can't stress enough the importance of making eye screening a priority.” Screening for retinopathy is unlike a general eye test. It involves checking the vision and then being given eye drops designed to dilate the pupils before photographs of the retina (the ' seeing' part of the back of the eye) are taken with a special camera.

The images are graded by a specially trained team and will show any changes due to diabetes that need to be monitored or treated. The images provide a permanent record for the team, who will use them to compare results year-on-year. The process may involve some stinging or discomfort for a few seconds when the drops are administered but is otherwise painless. The whole process only takes around 30 minutes.

The diabetic retinopathy team

Brief History 1989 – St Vincent Declaration signed. Its target to reduce world blindness due to diabetes by 1/3 in 5 years

1991 – Dr Broadbent was appointed and the Liverpool Diabetes Eye Study was born. In first year 700 patients were screened, rising to 10,000 in 2005.

2002 – National Service Framework for Diabetes set targets including offering screening to 100% of diabetic patients by 2007. Liverpool was one of 6 of the 103 programmes in England to meet that taget.

2005 – A two day international diabetic conference discussing the effects of diabetes was hosted in Liverpool to recognise St Paul’s ambitious screening programme. Over 200 experts, including 30 national representatives from 30 European countries, came together.

Local People with Diabetes Urged to Attend Annual Eye Screenings

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ST PAUL’S EYE APPEAL FOCUS 6

Keratoconus Self Help and Support Group A North West of England Keratoconus self help and support group was set up in March, 2014. The aim of the group is to provide information to those with Keratoconus and their families and provide a support group. If you would like to join the group please call Anne Klepacz on 020 8993 4759 or email [email protected]

Former Lord Mayor of Liverpool and Alderman of the City, Roger Johnston has experienced St Paul's pioneering treatment first-hand. As a Type 2 diabetic, he was invited to attend a routine eye screening three years ago held in his local GP surgery organised with the help of St Paul's. Shortly before retiring from his role as a long-serving Liverpool City Councillor he discovered that the test results diagnosed diabetic retinopathy - a condition involving damage to the retina which leads to blindness if left untreated. Mr Johnston was advised that if nothing was done he would lose his sight within 18 months. Amongst a range of options, he was invited to participate in a clinical trial funded by Novartis. A course of injections would be administered over the next year and a half to stabilise his diabetic maculophthy and allow subsequent successful removal of cataracts from both eyes. “The result was nothing short of amazing” says Mr Johnston. After the operation I remember watching the squirrels running about on Woolton Golf Course from my window and noticing just how vivid the colour of their fur was. I

was also delighted to be able to spot different bird species and identify between a robin and a green finch which I couldn't do before. Everything seemed so much brighter, more vibrant and clearer. Previously I hadn't had the confidence to drive at night but, now that I had my sight restored, my quality of life had been completely transformed. The only downside of my new found sharp vision was that I ended up paying a big bill for re-decorating the entire house once I could see just how much needed doing! “The staff at St Paul's were incredible and I really felt that I received five star treatment from world class professionals. If I hadn't attended the screening appointment and be able to benefit from the clinical trial I would now be blind and not a day goes by when I don't appreciate the quality of care and treatment I was given. Everyone with diabetes should ensure they make the time to attend eye screening appointments to avoid risking losing their sight. In Liverpool we are so fortunate to have a world class institution on our

doorstep delivering ground-breaking work which changes lives and I hope my story encourages people to take their eye health seriously.”

Mr Johnston continues to attend regular check-ups but enjoys a full and active life and is currently planning a driving excursion to Paris accompanied by his son.

“The result was nothing short of amazing”

Top Picture - Alderman Roger J0hnston as Lord Mayor of Liverpool in 1994-1995

Bottom Picture – Alderman Roger Johnston at the unveiling of a plaque to commemorate the 150

th anniversary of the

formation of the District Nurse Service in Liverpool in 1859.

Roger’s ‘amazing’ treatment

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ST PAUL’S EYE APPEAL FOCUS Spring 2014

Remembering St Paul’s in your will can leave a lasting

legacy for the future

Naomi Pinder Jackson & Canter

The St Paul’s Eye Appeal supports the world-leading St Paul’s Eye Unit in Liverpool by raising funds for research into sight loss and eye disease. One of the best ways you can really help with this appeal and enable it to continue to make an impact is through Legacy Giving. By remembering St Paul’s Eye Appeal in your will and leaving a share of your estate, however big or small, you can support treatment for future generations. Naomi Pinder is Head of Wills and Probate at Jackson & Canter. The Liverpool-based law firm is a long-standing supporter of the appeal and Naomi said leaving a legacy for the charity is a way of leaving

There are also tax implications to Legacy Giving, as the Government has made legacy giving exempt from inheritance tax. If you leave 10% of your estate to charity but the remainder is still liable for taxation, it will be taxed at 36% rather than 40%. Also any gift you give to St Paul’s will be deducted from your estate before any tax liability is calculated. “These measures are in place to help you decide to give,” said Naomi. “The reality is money is tight for charities at the moment and they need support. To leave a legacy in your will for the St Paul’s Eye Appeal will make a major difference and help to retain an incredible treatment centre here in Merseyside.” To learn more about how you can leave a legacy to St Paul’s you can speak directly the Fundraising Team on 0151-706-4291 or contact Naomi Pinder at Jackson & Canter on 0333 321 4580.

for the charity is a way of leaving something lasting for the future. “Leaving a share of your estate to the appeal will have a wide benefit for people, not just locally, but across the country and even the world,” she said. “To leave 10% of your estate would help provide investment to help improve current treatments and develop new methods. “If you or a family member have ever benefited from the services of St Paul’s Eye Unit, it is a great way to give something back and say thank you. Having a will is the only way of ensuring that your family, friends, and any charity you wish to support, are provided in the way you wish. Without a will the state will decide, which can be a lengthy process. ”

Giving the gift of sight

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ST PAUL’S EYE APPEAL FOCUS 8

Forthcoming Events

The Foundation for the Prevention of Blindness St Paul’s Eye Unit Royal Liverpool University Hospital Prescot Street, Liverpool L7 8XP Telephone – 0151-706-4291 Email – [email protected] Registered Charity Number 1047988

Part of

For latest news and information please visit our website

www.eyecharity.com

The Foundation for the Prevention of Blindness supports eye research conducted between St Paul’s Eye Unit at the Royal Liverpool University Hospital, and the University of Liverpool’s Department of Eye and Vision Science. Through the generosity of our supporters, The Foundation helps specialist eye doctors and research scientists to pioneer new eye treatments. The more support we receive, the more we can do to prevent blindness. Please support us in any way you can. To learn more how you can help, please visit our website or call us - the details are below. THANK YOU!

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