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Annual Review 2013 Support throughout central vision loss
Annual Review 2013
Support throughoutcentral vision loss
Welcome
Inspiring people to volunteerMandy Smith’s macular condition has led to Charles Bonnet Syndrome.
Mandy says: “The Macular Society’s leaflet on hallucinations was a great help in coping with them.”
Mandy greatly appreciated the Society’s support group in Hertford. She was inspired to set up a group closer to home, in Harlow, and to become a volunteer buddy to help others cope with their hallucinations.
Richard Elliott Tony RucinskiChair Chief Executive
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More than half a million people in the UK have age-related macular degeneration. Two hundred people a day are added to that total and by the end of this decade there will be 650,000 people with late-stage AMD. Thousands more have inherited macular dystrophies. This represents an enormous burden of sight loss and all that it can bring; fear, loss of independence, isolation and even depression.
The unique work of the Macular Society has never been so vital: we are the only UK charity dedicated to supporting people with macular conditions, and the only one completely focussed on finding new treatments and a cure. In 2013 we funded more research than ever before and we helped more people living with macular disease. Thank you to all our members, volunteers and supporters for your dedication, enthusiasm and generosity in helping us in our work. We have much more to do in 2014.
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Finding a cure for half of all blindnessMacular disease accounts for more than half of all sight loss. Finding a cure is vital. We are the only charity that focuses on this area of medical research. Last year we awarded our biggest grants ever.
£170,000 to transform research methods and bring us closer to effective treatments and a cure.A major barrier to research is that it is costly and difficult to obtain human retinal tissue. Professor Majlinda Lako, Newcastle University, is using human stem cell technology to create retinal tissue, which can be used to test new treatments. It should help speed up research into macular conditions.
£115,000 to develop a process to help stem cell studies nearing the clinical trial stage.There is evidence that stem cell- derived retinal cells lack longevity. Dr Anthony Vugler, University College London, is studying the effects of light on the development of stem cells to see if it increases the viability of cells when they are transplanted into the eye.
£80,000 to improve eye clinic performance and establish a ‘real world’ standard of care.Eye clinics are struggling to deliver treatments in time to help slow or stop the progress of wet AMD. Mr Rob Johnston, Gloucestershire Royal Hospital, is developing a website to detail clinic performance. This can be shared and used as a practice indicator.
“The financial support from Macular Society has given the Newcastle group the potential to transform an idea into an exciting scientific project that will help to model AMD.”
Professor Majlinda Lako, Newcastle University
Membership and fundraising
We are deeply grateful to the many supporters who left us gifts in their wills. This wonderful increase in legacy giving has resulted in a financial surplus that will enable us to plan even greater investment in research to find a cure. It will also help us to deliver better and more wide-ranging services for people with macular conditions and their families. As one of the most efficient charities, the more we receive through legacies over time, the more we will be able to do, and the sooner we will be able to bring about more treatments and a cure.
The Macular Society is the biggest membership charity in the eye health sector. Our 15,000 members give us a strong and unique voice with which to speak out for people with macular conditions. Our members are also vital in raising the money that funds our services and pays for research. Many members volunteer to help deliver our services, giving others the benefit of their experience of living with macular disease.
In 2013 we conducted a review of our membership to ensure our offers are relevant and appealing to the next generation with AMD, friends and family and those with juvenile dystrophies. We will improve the marketing of our member scheme and launch a new supporter scheme in 2014.
We continued to diversify and invest in fundraising. Thanks to the efforts of our fundraisers and the generosity of our donors we raised £2.5m this year, generating £10 for every £1 invested. In addition we introduced a sweepstake, which reaches out to thousands of new contacts. This is a vital tool in raising awareness of macular disease.
Mrs Bennett from Oxfordshire, the lucky winner of our autumn raffle. 26 runners raised over £3,000 at the London 10k in July.
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Our services
Overall there has been a 15% increase in people benefitting from our services.
We now have 276 local groups, up 27 from 2012. The groups, which usually meet monthly, offer valuable social, peer supportto about 8,300 people. There are some groups especially for younger people of working age.
9,500 people received advice from our helpline, an increase of nearly 14%.
2013 saw a 30% increase in the number of people using our BACP-accredited counselling service and 88 people used our telephone befriending service.
Three new partnerships with local societies for the blind and 46 new volunteer trainers extended our ‘Skills for seeing’ (also known as ‘eccentric viewing’) training across the UK. 419 people received training to make the best use of their remaining sight. We launched a scrolling text reader app for iPads and smart-phones, which helps people using the ‘steady eye’ reading technique.
Many of our services are delivered by volunteers and 126 new volunteers joined in 2013, bringing the total to 1,129.
“I just want to help people in the same way that I have been helped.”Sue Lockwood from Grimsby appreciated the help shegot from the Society’s helpline so much that she decided to give something back.
Sue became a daily living champion and demonstrates high and low-tech gadgets to help other people with macular conditions.
To find out more about any of our services, call our helpline on 0300 3030 111.
Counselling Support groups Telephone befriending Skills for seeing trainingDaily living
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Knowledge
We want everyone affected by macular disease to have high- quality information and to be referred by professionals to the Society for help and support.
A brand review and rebrand, launched at the beginning of 2013, strengthened our reputation, improved our range of publications and helped us reach and help more people than ever. Our new website attracted more than twice as many visitors as in 2012 and we have increased our presence on social networking sites.
We launched a professional member scheme to encourage eye care professionals to use our materials. We also trialled an eye clinic leaflet distribution service with the International Glaucoma Association.
The number of leaflets distributed more than tripled to 600,000. Our leaflets are now available in more than three quarters of NHS eye clinics. The wider reach raised our profile considerably and contributed to the increase in service users.
We continue to produce our highly regarded quarterly members’ magazine Sideview, and our annual research journal, Digest.
We held six Top Doctors seminars, in partnership with the Royal College of Ophthalmologists. Attendance at these events increased, with 93% of attendees reporting a better understanding of the latest research, treatments and low vision services.
We published ‘Essential Care Guides’ for wet and dry AMD to help patients understand and receive the care to which they are entitled.
“The Macular Society’s information pack pointed me in the right direction.”Mr Joseph Bryce, 77, says: “Medical staff don’t have the time to tell you all you need to know about macular degeneration. I really was enlightened by the pack. It not only explained my condition, but more importantly, it told me what I could still do.”
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Campaigning for people with macular disease
We issued 163 press releases, of which 140 were used in local and national press. This meant about 97m people read about macular disease, our work and our campaigns.
The Macular Society is the biggest patient group in the sight loss sector. Our membership enables us to speak up for people with macular conditions.
We wrote twice to NHS Trusts and Clinical Commissioning Groups reminding them of their responsibility to provide adequate treatment services for wet AMD patients. We then followed that up with a major Freedom of Information request campaign, revealing that one third of NHS Trusts were unable to meet National Institute for Health and Care Excellence (NICE) guidelines on the treatment of wet AMD.
We surveyed our members about the impact of Charles Bonnet Syndrome (CBS). The results will help us raise awareness of CBS and campaign for better care.
We have contributed to NICE appraisals for new drugs as well as the revised guidelines for the treatment of AMD by the Royal College of Ophthalmologists.
“Don’t give up hope – the Macular Society won’t!”Berni Warren has diabetic macula oedema (DMO). Laser treatment and Avastin injections didn’t help. Although Lucentis was available on the NHS for AMD patients it wasn’t for those affected by DMO. Our success in getting NICE approval for the use of Lucentis for patients affected by DMO now enables people like Berni to receive the treatment she needs. Berni says: “I can’t thank the Society enough for their campaign.”
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Summarised accounts for year ended December 2013
nearly £1m in legacies received compared to 2011. This enabled us to embark on a number of projects including the launch of a professional members scheme, a Daily Living Champions service and a drive to increase the distribution of educational information. In addition, we significantly increased the amount we invest in research.
The launch of these new projects meant our spend in 2013 on charitable activities increased by 22% and exceeded £2m for the first time. Consequently we were budgeting for a deficit in the year but, in the event, legacies were again well above budget, leading to a surplus and a healthy reserves position at year end.
We are budgeting for a significant deficit in 2014 with the implementation of the 2014 priorities set out in the full Report. The outcome for 2014 will depend on the level of legacies received, these remaining our most unpredictable source of income.
The summarised accounts that follow are not full accounts but are a summary of information extracted from those accounts. Reference to the full statutory accounts and Trustees’ Report should be made for a full understanding of our financial affairs. These are available from the Chief Executive, Crown Chambers, South Street, Andover, Hampshire SP10 2BN, telephone 01264 350 551 or on the Society’s website at www.macularsociety.org.
The statutory accounts, on which the auditors have expressed an unqualified report, were approved by the Trustees on 9 April 2014 and have been submitted to the Charity Commission.
Financial review The financial statements show a surplus for the year of £523,000 (2012: £936,000). Total funds at the year-end were £2,951,000 (2012: £2,428,000).
The large surplus in 2012 arose mainly due to an increase of
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Ruffer is instructed not to invest in tobacco stocks due to the effect of smoking on eyesight.
The Society’s policy is to invest the remaining cash reserves in bank deposits or similar instruments.
Investment policyDuring the year the Trustees decided to place £850,000 of cash reserves (representing our minimum reserve requirement) with Ruffer LLP, an external investment manager. Theirperformance is reviewed by the Finance Committee, which reports to the Board of Trustees.
Information & Services
Fundraising
Research
Governance
Our year at a glance £1,768,000 £514,000
£441,000
£45,000
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Summarised accounts for year ended December 2013
2013 2012 £000 £000Income Subscriptions 307 298Legacies 1,409 1,320Donations & unrestricted grants 738 697Grants for specified charitable activities 360 436Fundraising events 407 356Trading & other income 92 109
Total income 3,313 3,216
ExpenditureCharitable activities: Sideview & Digest 206 166 Educational information 364 190 Helpline & Counselling 210 179 Groups & volunteer co-ordination 527 433 Support group activities 157 147 Low vision 243 223 Research 441 313 Other expenditure 61 82
Total charitable expenditure 2,209 1,733
Cost of generating funds 514 506 Governance costs 45 41Investment portfolio performance 22 -
Total expenditure 2,790 2,280
Net income- Unrestricted 460 829- Restricted 63 107
523 936Funds and net assets at 31 December- Unrestricted 2,159 1,699 - Restricted 792 729
2,951 2,428
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Paul Ryb BA(Hons)*
Jane Touil BA(Hons) MA*
Valerie Wares*
Alan Barr PhD* (retired 18 June 2013)
Deanna Cranston*(retired 3 April 2013)
Sally Hawkes BSc(Hons)*(retired 3 April 2013)
Pauline Holloway(retired 3 April 2013)
Mollie McBride MBE*(deceased 12 November 2013)
Jan Mitchell PhD, CPsychol(retired 4 December 2013)
Roger Pepper FRICS(retired 3 April 2013)
John Raffles(retired 12 June 2013)
Chief Executive & Company Secretary
Helen Jackman BA(Hons), FRSA(retired April 2014)
PatronsHenry Blofeld OBE*Gemma Craven*Gwyneth Dickinson MBE* Denis Norden CBE*Peter Sallis OBE*
Directors, Company Officers & Trustees Richard Elliott, Chair*
Alan Walter, Vice Chair*
Tom Wilson FCAHon. Treasurer
John Dunston MA, ACIL, FRSA (appointed 12 June 2013)
Toby Evans BA(Hons)* (appointed 4 April 2013)
Timothy ffytche LVO, FRCS, FRCOphth
Lucy Howe FRCOphth
Martyn Long CBE*
Alan MacFarlane*
Margaret Packham BSc(Hons), MCIPD
Patrons, Directors & Trustees
The rules of the Society require that over 50% of the trustees are visually impaired. The symbol * indicates visual impairment.
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Simon Gibson Charitable TrustThe late Mrs Aexel-Annelene BriggsThe Clothworkers’ FoundationThe D’Oyly Carte Charitable TrustThe Gannochy TrustThe R S Macdonald TrustThe Rank FoundationThe Rayne FoundationThe Robertson TrustThe Steel Charitable TrustThe Violet M Richards CharityVisionAid Technologies
Big Lottery FundBill Brown’s Charitable Settlement of 1989Brian Mercer Charitable TrustCommunity Foundation Tyne & Wear and NorthumberlandDolphin Computer Access LtdGarfield Weston FoundationKeep Fit AssociationMasonic Samaritan FundOptelec LtdPilkington Charities Fund
Thank you
Registered Charity Nos 1001198, SC042015 Scotland, 1123 Isle of Man. Macular Society is the trading name of the Macular Disease Society. © Macular Society 2014. AR13 06/14
Macular Society, PO Box 1870, Andover SP10 9AD
01264 350 [email protected]
Support throughout central vision loss
@MacularSociety
www.facebook.com/macularsociety
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A huge ‘thank you’ to all our supporters who made our work possible by donating funds or volunteering their time over the last year. Our donors include:
